Still Waiting...

Joe Saxon

I waited for my baby’s first word so eagerly. Would it be ‘mama’ or ‘dada’, or even ‘yum’ since he loved his food so much? I listened to his every gargle and babble, and tried desperately to make out a word. I never did.

By his first birthday I was willing him to speak. I was willing him to look at me, respond to his name and crawl too, but he wasn’t having it. He would eat, sleep and sit in his bouncer. He couldn’t have cared less about toys though, scrunched up paper would get his attention much more than I ever could.

By 18 months, I was worried.

By two years old, I was terrified.

Speech and language therapists came to visit us at home. I was encouraged to play with him more, even though this was all I did day in and day out.

‘He’s just delayed,’ they said. ‘He’ll talk soon,’ they promised me.

They really shouldn’t have promised me that.

By three, I was devastated. His peers were now stringing sentences together, playing with friends, running around and learning to go on trikes and scooters. My son hadn’t mastered walking, wasn’t aware of other children and still hadn’t said ‘mama’.

I was sent on courses. ‘You need to do this,’ they told me. ‘Sing nursery rhymes to him,’ they suggested. ‘Make photographs to help him communicate,’ they encouraged. ‘Name things for him, sing a song and pause to give him time to say the missing words, read to him...’ and so on.

It was all supposed to work.

I did everything that they suggested, and so much more.

I invested everything I had, and then some, to help him.

He had one–on-one support at nursery. Then he was given a specialist place with high staffing and small class sizes.

‘We find when kids like yours start here they come on in leaps and bounds,’ the head teacher boasted.

He left a year and half later, no different than the day he started.

Then he started school.

‘We use total communication here: pictures, sign language, spoken language, technology and talkers. We have highly trained staff, and you’ll see your child come on so much when we have him full time,’ the school said.

He’s been there over five years now, and still in nappies. He still can’t talk. He still can’t jump, hop or catch a ball. He can’t read or write a single letter or number.

Everyone promised me so much.

Yes, most children with autism DO go on to learn to read and write and talk. Yes, most go on to be at least semi-independent.

No-one told me the reality is that some children with autism will never talk. No-one told me that some will have such significant difficulties that they will need 24/7 care all their life.

It is right to give parents hope, but no-one can promise anything in life.

Everyone told me if I did this course, if my son went to this placement, if I saw this therapist or did this treatment then he would talk, walk and learn.

The reality is, my son is one of the children that will likely remain non-verbal for his entire life.

He is almost ten now. That’s a whole decade of therapies, courses, interventions and nursery rhymes, and none of it worked.

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